As our healthcare system faces ongoing challenges, many Canadians struggle with inadequate access to primary care. In response, healthcare specialists are dedicated to developing solutions that improve access and outcomes for both patients and providers.

This is where health care data comes in.

How can data truly make a difference? That is what we are here to explore!

“It could save your life.”

Alies Maybee, co-founder of the Patient Advisors Network (PAN), has spent the bulk of her career advocating for greater access to health data. PAN is a national network of patient and family advisors and partners. As one of the lead authors of the 2019 report titled “Person Generated Health Data Principles through the Patients’ and Caregivers’ Lens,” Maybee believes that increasing public knowledge about health data can help providers do their jobs more efficiently and enhance patient care. She notes that advances in technology over the past decade have greatly expanded the possibilities for how the Canadian health care system stores and shares health care data.

“In the old days, you went to the doctor, and they scribbled notes in your file and that was that” Maybee says. “Everything was paper-based and not available to the patient at all. Now, because of the Internet and the digital age, we have this opportunity to have a visibility with the data that we normally would not have.”

While many people may find the concept of “health data” overwhelming, Maybee emphasizes a significant benefit to improving your own health data literacy: “it could save your life.”

Types of Data

Health data involves a large variety of information. At the individual level, two main types are test results and patient files. Understanding the results of medical tests and their implications for health is crucial. Equally important is knowing the content of one’s medical file. This knowledge helps individuals better understand their medical conditions, verify the accuracy of records, ensure no vital information is missing, and align their expectations with the medical care received, such as confirming specific tests are ordered or diagnoses pursued.

Patient Rights

Every Canadian has the legal right to access their own patient record, a right protected by national health information privacy laws. There are several reasons why individuals might want to review their health record: to monitor a current health condition, ensure accurate information entry, bring records to another health care provider, particularly where records are not shared.

The challenge lies in the fact that health care falls under provincial jurisdiction, resulting in varying processes for maintaining and accessing patient records across provinces. In some provinces, records are maintained separately by each health care provider, lacking a centralized portal for comprehensive health information.

This is beginning to change, with various provinces moving toward centralizing data. However, as Maybee points out, we are not there yet.

I have about four portals to the four different hospitals that I’ve attended, and there are slices of my info in each one of those but nothing comprehensive—and I have no visibility to my primary care provider or any of the specialists I’ve seen. My data is fractured, so it’s very hard for me to pull things together and help manage my own health situation if I have to try and stitch data together across multiple platforms and multiple providers. So, the ultimate goal really is to see that we have one patient, with one record in terms of visibility.

Organizations like the Canadian Institute for Health Information (CIHI) are collaborating with various stakeholders to implement a more connected care model in Canada. This initiative aims to establish national guidelines and standards for sharing information among health care providers and with patients, including enhancing patients’ access to their own health records.

Privacy

Certainly, privacy issues are crucial in discussions about data sharing. However, Maybee emphasizes the risks associated with withholding information, is a perspective that is often overlooked.

“Not sharing data can harm and even kill people. Visibility to our data is important.”

Some individuals may simply wish to know if their test results are “normal” or if they have been referred to a specific specialist. Conversely, those managing severe or chronic conditions may be more interested in precise test results to track their health over time.

While preferences for information may vary, it is crucial that every Canadian has equal access to their own health information—a uniformity that is currently lacking due to varying provincial data management and privacy regulations. Access is often lacking due to the “digital divide,” the digital inequity of access to bandwidth or devices, and not all patients having the ability or desire to go online.

A Team Approach to Health Care

Advocates for increasing health data literacy among the general public argue that doing so benefits everyone in the healthcare system. When patients and healthcare providers have access to the same information, it enhances patient care and empowers patients to actively participate in managing their health.

As Maybee points out, “There is a wealth of knowledge available, and the challenge, especially for family doctors, is that they cannot be deeply knowledgeable about every ailment and possibility. If you’re an informed patient, why wouldn’t your family doctor embrace that? It helps them perform their job effectively.”

It’s often the case that when patients have a negative interaction with their health care provider, they attribute it to a perceived lack of care. However, this “lack of care” may not be the provider’s fault; rather, it could stem from inadequate information sharing among health care providers.

For this collaborative approach to succeed, both the provider and the patient must feel respected and listened to. Fundamentally, as Maybee acknowledges, trust is essential on both sides.

Access to our records is a significant element in building transparency, which leads to trust. When we’re looking at our records and we see there are mistakes or things that aren’t quite correct or are missing, what can we as patients, do about it? Because the decisions being made about our health are being made on faulty data and that does not serve us well and it means that our physicians can’t do their best jobs for us. There needs to be a mechanism by which patients, after they’ve looked at their records, can provide feedback.

Increasing Health Care Data Literacy

According to a 2020 Canada Health Infoway survey, “40 per cent of Canadians reported that their level of understanding of their health information [was] a barrier to using health technology.”

Given these challenges, how can individuals advocate for themselves in a system that lacks standardization and is under significant strain? First, Maybee emphasizes the importance of identifying reputable sources for information. This aligns with broader digital literacy skills and being able to discern credible sources from those that disseminate misinformation.

“Google can give you a lot of information, but you have to parse through misinformation and disinformation to get to the gold.”

Maybee suggests adopting a gentle yet informed approach when engaging with health care providers.

“Some of the younger doctors, who have grown up with technology and Google, appreciate when patients come prepared with questions,” notes Maybee. She also recognizes that other providers may have a more traditional approach that values the provider as the ultimate authority.

This highlights the necessity for a public education campaign aimed at educating both health care providers and the general public about the advantages of having well-informed patients and fostering a collaborative health care team approach.

Maybee emphasizes the importance of respecting the years of education and expertise health care providers possess while also valuing the lived experiences of patients as integral to their health care journey.

Her advice for approaching health care providers is straightforward: “Ask questions,” she suggests. “Acknowledge their expertise and express your interest in their opinion after doing some research yourself.”

When providers take the time to discuss results and notes with their patients, it benefits everyone involved. By honoring both the provider’s knowledge and the patient’s experiences, better health outcomes can be achieved, reducing the workload on providers and alleviating strain on the health care system overall.

Transitioning to a team-based approach to health care, where patients are active members informed about their own health data, aligns with CHIMA’s vision for “an equitable country where quality health information empowers people to make better decisions.”